End-of-Life Care – We Can and Must Do Better

No doubt this year there will be further debates in at least some Australian legislatures about whether euthanasia and assisted suicide should be legalised. The proponents of such laws had a major breakthrough in Victoria late last year and will use it as a vehicle to press for similar laws elsewhere in this country. For them it is onward and upward with just five more state legislatures, two territory legislatures and one federal legislature left to conquer. They believe that like dominos these jurisdictions, not necessarily in any particular order, will fall one at a time until we have coast-to-coast euthanasia and assisted-suicide laws right across Australia.

As they have proven up to this point, and there is absolutely no reason to believe that this is going to change, those advocating for such laws are long game players. They are dedicated, hardworking, strategic and do not take no for an answer. For these reasons they must be respected and never be dismissed as a band of ideological crack-pots. They know what their objectiveis, they are patient and have this steely conviction that they are, to use their words, "on the right side of history". They are not to be underestimated.

During the parliamentary debates last year in New South Wales and Victoria about whether the states should legalise euthanasia and assisted suicide, I observed the supporters of the legislation time and time again state their commitment to supporting and improving palliative and end-of-life care. Most, if not all, said that improving both the quality and availability of this care was important, but then went on to argue that the clear priority should be to establish a legal framework for some individuals, under certain circumstances, to be able to access euthanasia and assisted suicide.

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What continues to puzzle me is why those who state they are so committed to reducing pain and suffering in society appear to do so little to bring about actual improvements in both the quality and availability of palliative and end-of-life care. They say the right things, but that is where it seems to end.

The Medical Journal of Australia on 1st May 2017 published a piece by Ezekiel Emanuel from the University of Pennsylvania in the USA. It was titled Euthanasia and physician-assisted suicide: focus on the data. The article is available via the internet. It makes a number of important points worth reflecting on. However, I would like to focus on one in particular. Quoting directly from the piece:

"These data mean that the claim that legalising euthanasia and PAS will help solve the problem of poor end-of-life care is erroneous. Euthanasia and PAS do not solve the problem of inadequate symptom management or improving palliative care. These interventions are for the 1% not the 99% of dying patients. We still need to deal with the problem that confronts most dying patients: how to get optimal symptom relief, and how to avoid the hospital and stay at home in the final weeks. Legalising euthanasia and PAS is really a sideshow in end-of-life care - championed by the few for the few, extensively covered by the media, but not targeted to improve the care for most dying patients who still suffer."

………..

"We should end the focus on the media frenzy about euthanasia and PAS as if it were the panacea to improving end-of-life care. Instead, we need to focus on improving the care of most of the patients who are dying and need optimal symptom management at home."

This point, and may I say it is a critically important point to make, was given some specific Australian context in early January this year by Ms Liz Callaghan, the CEO of Palliative Care Australia. Ms Callaghan was commenting in the media about the Productivity Commission Draft Report titled Introducing Competition and Informed User Choice into Human Services: Reforms to Human Services dated June 2017. Specifically, she reflected on chapters three and four of the draft report, "End-of-life care in Australia" and "Reforms to end-of-life care".

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The Productivity Commission document was frank in its observations. Quoting from it, if Australia does not undertake a significant policy overhaul: "tens of thousands of Australians will die in a way and in a place that does not reflect their values or their choices." As Ms Callaghan explained, there is just one palliative medicine specialist available for every 704 deaths each year. Consequently, the desire of thousands of gravely ill Australians to die without pain and surrounded by family is going unmet because palliative and end-of-life care is falling well short of the mark.

It is hard to believe that on an island continent of almost 7.7 million square kilometres, with a population of nearly 25 million, there are just 213 palliative medicine specialists. I will repeat that: with a population of nearly 25 million, there are just 213 palliative medicine specialists. Is it any wonder that there are people dying in circumstances where they experience unacceptable levels of pain and sub-optimal care?

It should therefore come as no surprise that Palliative Care Australia is calling for the Commonwealth Government to appoint a National Palliative Care Commissioner to help drive this critically important reform. Furthermore, it is proposed that the Council of Australian Governments should elevate palliative and end-of-life care so it becomes a national health priority.

Some argue that we should hold off on passing euthanasia and assisted suicide laws until we get our palliative and end-of-life care up to scratch. In other words, we should not move on one until the other is addressed. I do not share this view – I do not believe we should pass euthanasia and assisted suicide laws at all because the problems and dangers around them are deep-seated and intractable.

What should not be contested though, and indeed should be a point of furious agreement, is that big inroads can be made. If the political will were there, we could significantly improve the circumstances around the deaths of many, many Australians every year by bringing palliative and end-of-life care out from the margin and placing it in the centre of our health care system.

It has been said that there are only two certainties in this life: death and taxes. Perhaps it is time in Australia right now to commence more spending of our taxes on death.

About the Author

Greg Donnelly is a Labor Party member of the New South Wales Legislative Council. He has been in the Legislative Council since February 2005. He is currently the Deputy Opposition Whip in the Legislative Council. He is the Chair of General Purpose Standing Committee No. 2 and Deputy Chair of the Standing Committee on Social Issues. He is also a member of the Privileges Committee, the Committee on Children and Young People, the Select Committee on the Legislative Council Committee System and the Select Committee on Human Trafficking.